My story with cancer - Jimmy fund walk Oct 1st
Last year my mom got cancer, multiple myeloma. I didn’t know anything about this cancer, and I discovered how horrible it is, even if treatment is available, people get misdiagnosed all the time, and there is no cure. I am doing the marathon this year with the Jimmy fund walk event. NextRNA, the company I work for, joined as a team, and it gave me the opportunity to do something and share my story to bring awareness.
Please, if you can, add a few $$ to my fund-raising page: http://danafarber.jimmyfund.org/goto/lopantano, and/or share the link with friends. Any amount will impact people like my mom.
June 18, 6 miles
Chapter 01: September 2022, my mom started with some back pain and started to lose mobility. She stopped doing her normal activity.
June 24, 7.5 miles
Chapter 02: One month later, doctors only gave her pain medication, all kinds, nothing was working, and she was not able to walk or sit. The health system denied her any kind of imaging to evaluate further.
July 1, 9 miles
Chapter 03: November 2022, my mom was getting worse, not able to move at all, and starting to lose short-term memory and not able to maintain a normal conversation. After a lot of push from my dad, they got a referral from primary care to get an MRI in a private clinic. We needed to wait for 1 more week now.
July 8, 10.5 miles
Chapter 04: In December 2022, my mom got accepted into the hospital after having results from the MRI that showed some kind of cancer inside the bones. She had broken discs and ribs. In one day we knew it was MM, protein M levels were incredibly high. At this point, she was spending all the time in bed. She was disoriented. I bought a ticket to Spain right away.
July 15, 12 miles
Chapter 05: Still in December 2022, I arrived there to see my mom in bed and told me not to touch her too hard because it hurts…my heart broke. It was late, so I went to bed. The next morning I saw my mom standing up, so weak. That weak was all about finding new ways to make her more comfortable. She couldn’t sit for more than 20 minutes, she could barely eat. It was week two of chemotherapy and nausea was a strong side effect.
July 22, 13.4 miles
Chapter 06: Still in December 2022, we were figuring out everything still. In her third week of chemotherapy, she got a strong reaction to the skin. She was red all over the belly. It was scary, and her PCP didn’t want to give her anything because she didn’t know what could happen with her treatment. The PCP told us to go to her oncologist. But, and big BUT, the system is not ready to contact your oncologist. Your option is to go to ER and spend 6 hours until somebody decides if they contact the oncologist. I had to go with my dad to the hospital and intercept her oncologist in the corridor. But we didn’t find him, so we asked a nurse who had some compassion for us and call the oncologist. He told us to come the next day and ask for an appointment during the day. We had to wait 3 hours the next day, with my mom in a wheelchair in pain and taking morphine every 2 hours. It was a reaction to some antibiotic. It took 2 weeks to go away.
July 30, 13 miles
Chapter 07: December 25th, After this, we got to just live one day at a time. Christmas came, we celebrate as we could. We had dinner at 7 pm and my mom was in bed at 8 pm as any other day. It was so sad seeing her eat that little. My mom enjoyed cooking and eating, but this year was not like that.
August 12, 9 miles (back from vacation)
Chapter 08: December 31st, Nothing else happened that last week of the year. New Year’s Eve came and we did the same as a normal day. I cooked some traditional empanadas and we were done by 8 pm. She barely could stay sitting for more than 20 minutes. She still needed help getting ready for bed. Amazingly, she could still go upstairs by herself though.
August 19, 12 miles (back on training mode)
Chapter 09: January 2023, last week of treatment. The first week of January she started to be able to change clothes by herself. That was nice to see. Gain some independence. We decided to walk for 10 minutes one day, and we repeated the next day. That helped her. It was time for me to come back to Boston. After all this month, at least my mom was moving a little bit more, and treatment seemed to be working. Protein M reduced by 50%.
September 2, 16 miles (hike in CT)
Chapter 10: February 2023, the second cycle went without any surprise. Some skin reactions, but nothing compared to everything she went through in the past months. I tried to call every day, but it was difficult with work and time difference. Still, I could see she could move more. She kept walking 10min a day.
September 9, 18 miles
Chapter 11: May to August 2023. She went through 4 more cycles, a total of 6 at this point. Numbers were going down every time. Although she improved, the pain is still there. Two weeks before I went to visit this past summer, she got a stomach virus that left her in bed again. No strength. They spent 5h in the emergency room to know it was nothing related to the cancer. Still, scary.
September 16, 10 miles (15min/miles, that is fast…)
Chapter 12: August 2023. When I got there she was better from the stomach and energy, but she got a respiratory virus. This was really scary, because she got fever and couldn’t breathe. Again to the ER, 5h more. They said nothing more than a virus. We went home, and in the middle of the night, she woke up coughing like crazy to the point of not being able to breathe. She was very scared, we all were. We spent 1h in the bathroom with hot water, and that helped. I don’t know how I could remember that. She told me stories that she would do that whenever I got sick when I was little. The night passed and another day went on. On top of that, the antibiotic she was taking was causing depression. I had to leave to Boston, she was better physically, but mentally really bad.
September 23, 12 miles (last training day)
Chapter 13: Current time. It took 4 weeks for my mom to recover from those infections. Now she is better, almost like she was before last month’s episode. Treatment continues to work, but the pain is still there, and maybe forever there. I cannot stop thinking that with a diagnosis 1 month earlier, she could have a much better quality of life. I cannot stop thinking that the treatment is much better but there is no cure. That is why I am walking, and I appreciate everybody who read this and/or donated money in my name ( even now with all this crisis happening). Ultimately, this is why I am a researcher, because there is still a lot of work to do to give people suffering a healthy condition a second chance.
